Mummy, I don’t want to live this way!" Help stop a deadly disease! We are raising funds for medication!

Update: 08/23/23

Marcelinka just started treatment ❗️It can not be interrupted, because the consequences will be terrible....

Dear Donors!

It is only thanks to your support that we were able to start causal treatment for cystic fibrosis. We were able to buy the first doses of the drug. We could not wait any longer.

The first 2 weeks of treatment are over! I am, as a mom, the happiest under the sun, and I don't think Marcelinka yet fully believes how much can change now: that the restrictions and the torturous cough day and night has disappear!

THANK YOU! Thanks to the funds from the collection we have for 128 days of treatment. 128 days of a better life for our little girl!

And what's next? This is what we fear the most... Stopping treatment will bring everything to zero. And it could be even worse than before it started....

That's why we very much ask for every single zloty, to support and share Marcelinka's collection. The price for her life, for putting the disease to sleep, is 75 thousand zloty (!!!) per month. The drug is still not reimbursed. We have to raise this cosmic money ourselves. And we no longer know how...

We will be grateful for every contribution, every sharing.

Agata and Matthew, Marcelinka's parents

There is a saying - don’t judge a book by its cover. It fits our family perfectly.
On the outside, we seem happy, active, and popular parents.
Well…

We have two amazing daughters, Marcelina and Ada, who suffer from a terminal disease, called cystic fibrosis!

The average survival rate in Poland is 21-24 years old. That disease is a slow killer. It causes damage to the lungs, pancreas, liver, and intestines and eventually death.

We promised ourselves that we would do everything to provide our children with the best care possible. After our older daughter, Marcelina, was born, we became caregivers specialized in a terminally ill child overnight. In our short career as parents, we learned about stays at the hospital units, surgical procedures, ICU stays, and overwhelming feelings of hopelessness. We don’t want that for our children.

A causative therapy, the goal of our fundraiser, improves the quality of life of people with cystic fibrosis. The sooner it is implemented, the better chance to slow down the progress of the disease and prevent complications! It is why we are fighting for Marcelina to receive drug therapy now. We don’t want to wait until she turns 12 - when the treatment becomes refundable in Poland.

We want to guarantee her the same conditions as in the countries where the medication is available and refundable for children aged six and above!

Marcelina is too young to understand why she requires constant and tedious inhalations, drainages, and exercises. She tells us that she doesn’t want to live this way! It breaks our hearts, but we have no other choice.

What does her life look like?

She wakes up before 6 a.m. every day, takes medications, rinses her sinuses, and at 6:30 a.m., she is ready for strenuous inhalation and drainage, which takes about 1.5 hours and requires focus and attention. There is no place for lazy Sundays or summer vacations for us.

Another inhalation must be performed in the afternoon. We must choose the best moment for that, like when Marcelina does her homework, plays with other children, or has a rest. That’s when she has enough energy to undergo the treatment.

Kindergarten is also challenging for her. She’s on a special diet and needs to take enzymes, so we must prepare takeaway meals for her in a thermos. She also often skips kindergarten due to her infections.

After she returns home, but before the inhalation, she undergoes physiotherapy, including overall development and posture-improving post-surgery exercises.
Finally, when evening comes, Marcelina is too tired to play and goes to bed. Because of cystic fibrosis, there is no place for joy.

We want to provide our daughter with the best childhood possible and protect her against the constant battle with an invisible enemy - cystic fibrosis. We decided to launch a fundraiser for causative therapy. Marcelina can undergo it now as she has turned six this year. There is only one condition - we must pay for the unbelievably expensive treatment!

The drug is only refundable for children aged 12 years old and over. It might be effective since it stops the progress of the disease and doesn’t let its further development.

It brings hope for Marcelina! The drug repairs damage caused by the disease in the lungs, pancreas, and intestines on a cellular, multilayer level and helps breathing!

We must ask you for a great favor. It might sound cliché, but every penny matters! There are 38 million people in Poland. If everyone donated 1 zloty, they would provide Marcelina with four years of treatment! We appreciate every act of kindness towards our daughter. We believe that we will defeat that cruel disease!

Mateusz and Agata, the parents